Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

Background The involvement of people of all ages (including young people) in
health-related research is now widely advocated but research priorities are still
largely driven by professional agendas, with evidence from the adult literature
reporting a mismatch between researcher and patient generated lists of research
topics. To date, there have been no studies exploring the research priorities of young people with long term conditions including rheumatic disease. In this study, we will explore young people’s beliefs about their research priorities for rheumatic conditions and whether and how young people would like to become involved inthe research process.
Methods/Design We will hold up to 16 focus group discussions with young people (11–24 years) across England, Northern Ireland, Scotland and Wales. Two age groups will be recruited to the study, 11–15 year olds to represent early and
mid-adolescence and 16–24 year olds to reflect late adolescence and emerging
adulthood. Focus groups will be as interactive and engaging as possible, using a
mixture of statement sorting and a research prioritization exercise to stimulate the
discussion. Young people will be recruited via members of the Barbara Ansell
National Network for Adolescent Rheumatology (BANNAR) and relevant national
charities. Focus groups will be audiotaped and transcribed for analysis.
Discussion This project will help ensure full representation from young people with rheumatic diseases in the development of a research strategy for BANNAR and will ultimately inform a young person’s led involvement strategy to facilitate the future ethical and meaningful involvement of young people in BANNAR members’ future research programmes. In addition, a national young persons’ advisory group will be established, the constitution and format of which will be determined by the young people themselves.